Friday, February 13, 2015

A Smoothie Won't Save My Child

Why We Need Substantive Mental Health Reform NowOn Wednesday, February 11, 2015, I tuned in to C-SPAN to watch Representative Tim Murphy and the House Oversight and Investigations SubCommittee address concerns about a lack of leadership in mental health. The hearing was convened in response to a disturbing and disappointing report from the GAO that exposed the lack of care provided to people with serious mental illness. In her testimony, SAMHSA director Pamela Hyde, an attorney, essentially admitted that she doesn’t believe serious mental illness exists, but rather that people move in and out of illness and recovery.I’m not sure what the job qualifications are for someone who heads up a multi-billion dollar organization tasked with coordinating care for people with mental illness. But I’m pretty sure one of them should be actually believing that mental illness exists. What if the head of the Department of Health and Human Services was an antivaxxer whose response to the Disneyland measles outbreak was to tell parents to exercise their free choice and take their kids to measles parties? Would we let that person keep her job? To me, this analogy describes Ms. Hyde’s dangerous position on mental illness, or as she prefers to call it, “behavioral health.”Make no mistake: we’re in a public health crisis with mental illness, one that is far more serious than the measles outbreak. We need our leaders to acknowledge the scope of this crisis and to take decisive action, now.That same morning, as I watched the hearing, I received a desperate plea by email. The author has given me permission to share this story with you, though I will not share her name, because this is an ongoing situation. But her story puts a human face on the GAO report and the magnitude of the health crisis that parents of children with mental illness are experiencing.I hope that Pamela Hyde and all the people who think that mental illness doesn't exist read this desperate parent's plea. I hope Ms. Hyde starts to understand how badly our mental healthcare system has failed children, families, and communities. And then I hope she drinks a smoothie, one of SAMHSA's recommended treatments for behavioral health—and quietly resigns.A Mother's StoryThis is so hard for me. I had hoped and prayed that my daughter’s illness could be handled in private, and I fiercely protected her privacy. I’ve made up all kinds of stories trying to cover up where she is and what she is doing. When something did come out publicly, I put a spin on it because I was worried about how stigma would affect her.But now her illness has caused her to end up missing for nearly five days. So now I must tell you what it’s like to live this nightmare every day.And I want all of you, ESPECIALLY those of you who think you know exactly what you would do if you were me, to SHUT UP AND LISTEN TO ME!Just shut up NOW! Now you may be wondering how we got here. Well, my daughter has been struggling for a long time. While her diagnosis, signs and symptoms as well as the details regarding her disappearance aren’t something I will share, I will share the following: •Self-directed treatments. FAIL. •Forced hospitalizations. FAIL. •Voluntary hospitalizations. FAIL•Conventional Treatment. Alternative Treatment. FAIL. FAIL.•No meds. Too many meds. Right amount of meds. FAIL FAIL FAIL•FAIL.I let her go. I hung on. I told her what to do. I backed off. I got into her business. I gave her privacy.I surrounded her with loved ones. I left her alone. I attached. I detached.I encouraged her to get a job. I encouraged her to go on disability.I went to work to keep myself occupied and give structure to my life, and then I had to quit my job in order to accommodate her illness. I spent every dime I had in the bank. I researched every illness that could induce such behavior. I took her to specialists.I was even schooled on boundaries by her and her therapist. I was told that I needed to let HER decide everything. Did you know that a person in a state of full-blown psychosis gets to have a say in their treatment?And did you know that an adult with severe mental illness can exclude everyone, including their caregivers from having access to information?We were told that the only thing that would work was for her to be admitted to a full time residential facility. However, due to the public facility being booked and our inability to afford the expensive price tag for private care, we had no options except what our insurance would pay. So I confidently looked to our insurance company and trusted that they would pay for her recommended care. FAIL. Even though our coverage offers residential treatment, they only approve two to three days at a time. You get the authorization usually at the end of the third day. They normally decline and you have to appeal. And no matter what the doctor recommends, some pencil pushing bureaucrats at the insurance company get to decide whether or not your child is doing better and will approve or deny based on their decision, not the doctor’s. Offering residential looks good in the employee handbook, but doesn’t mean much when they can wiggle out of it when they don’t want to pay.My daughter was doing quite well in her program until they refused to pay after two weeks. I contacted dozens of therapeutic communities, farms, and other residential settings from across the country. But the cost of care averaged $10,000 per month. I don’t have that kind of money. And all those famous programs you read about, you know, the ones with the slick ads? Try $2,000 per DAY! And they don’t take insurance.But even if we could afford it, these care facilities won’t take my daughter if she doesn’t want to be there.And I could NOT make her. I considered conservatorship, but the private facility where she was going would not accept her with it. Like many private facilities, they will only accept a patient who is going there willingly. Her so-called "rights" as a patient with mental illness assure her the opportunity to even live homeless if she chooses, no matter how sick she is. Hey, it’s her "choice"!So last September, with no other options available, I brought her home. I hoped and prayed that things were going to continue to get better for her. I watched for signs. Then last week, she started showing signs of decompensation. I had started the process of getting her back to the doctor when it all came crashing down. And then she took off for five days. Today she is back safe and in a hospital, but what will happen next is anyone’s guess.The bottom line is that like many people with severe mental illness, my daughter needs full-time,and if necessary, court ordered residential medical care. You can love your child, but the family isn’t enough when they need constant supervision. And you can allow them certain freedoms, but when they are too ill to make decisions, you need support in forcing them to get care.I believe full time supervision would have prevented this downturn.And as much as I believe that Assisted Outpatient Treatment needs to be an option for people with mental illness who are able to remain in their communities, I don’t think in her case that it would work. I was already told that a first request for it would more than likely denied, especially since she had recently agreed to go to therapy and follow protocol. My daughter is a highly gifted young woman with a world of opportunities waiting for her, but sadly, thanks to this mental illness, she is now disabled.For years I have tried to figure out what went wrong. I have analyzed nearly every interaction and I cannot figure it all out. And I can sit here all day, with all the other caregivers who live this nightmare daily and blame myself and try to figure out what I could have done differently.But I can’t figure it out.I do know that I have loved this girl from the moment of conception, and I cannot fully express to you how bad my heart hurts over this.But I just can’t save her. I really tried. Our whole family did. But nothing works except residential care. And I’m hoping that we can access that care for her before it’s too late.

Hi Liza!I saw you Inside the Mind of a Rampage Killer (PBS) and I really appreciate your perspective and bringing awareness to mental health issues/difficulty/illness. There is such a stigma and we need to break it down. I know it's exhausting to care for a loved one who is unpredictable. I'm in a support group for those of us who have these loved ones. Currently my brother is in prison for his crime against another person; it's been very difficult for the whole family and I understand that this is the type of thing you're diligently trying to prevent for your son. I applaud you. -Brooke

Because a problem exists does not of itself mean that we have a solution.

I have a mentally ill son (currently living on the streets) and I know what I am talking about.

In this life there are incurable cancers, and innocent children die. Dementia robs the elderly of their wits. There are any number of incurable physical illnesses. And much mental illness is incurable in our present state of knowledge.

God understands the sense behind all this; we do not. But we can at least not beat ourselves up because we don't have any answers.

I think the hardest part for all of us to admit (especially parents, and especially, mothers...) is that there is not an answer. The Mother's story is one of many. And she says it perfectly... everything failed. Sure, we could fix the insanely political process of insurance, but the probability of that failing would be high as well.

There will always be one more thing to blame. We love our children, and to admit defeat is not possible.

But what do you do when there is not an answer? There is no fix? Life will forever be uncertain...

About Me

Liza Long, aka the Anarchist Soccer Mom, is a writer, educator, mental health advocate, and mother of four children. She loves her Steinway, her husband, her kids,and her day job, not necessarily in that order. Her book "The Price of Silence: A Mom's Perspective on Mental Illness" from Hudson Street Press is available in bookstores and online. The views expressed on this blog are entirely her own and in no way reflect the views of her employer (or anyone else, for that matter).